P.S.

..and thx for your posts and comments. They get emailed to each of our phones... And I know he enjoys the contact with the outside world.

Jan 31rst Flippin Britany

let's just note and move on...
Ok first of all I had to park at the beach cuz the parking lot was full due to the zoo here cuz of britany spears. Enough said about that poor woman although if she wants a real problem Mark would be happy to trade with her.
today mark looks SOOOO much better. Bit of color back in his pale complexion (oh sorry he likes to be called fair not pale...my bad :)
the pain is under control now too. Pain is at a 2 today which makes me sleep better tonight. Of course he can't move around well but he did get in and out of a chair all by himself. Isn't it amazing how the human body heals? So today he is chillin, healin, and I am enjoyin one too many snookie cookies (thx much). :)
so day three seems to have taken mark to better spot and he isn't climbin the wall in pain. I just can't til he can come home. Hospitals are no fun ....i really don't know how cole and lisa work at them. but modern medicine is truly amazing.

Up And At'em

The pain is much better today. They switched me from dulodid to morphine at about 3am. It really didn't help until this morning when the doctor ordered an anti-inflamitory/pain releaver. Now all is good. Nicole (Jenna's sister who works here in NICU) explained to me that once it is under control, it will be easier to maintain and manage. Thank God. It wasn't the incision that hurt either, just the area where they cut out my pancreas ans spleen. The incision did hurt if I was getting up and used my stomach muscle. I'm trying to find away around that.

The doctor wants me to try walking around today. So far I have had to walk in place because of this tube coming out of my face. They are going to get a plug for the tube so I can actually walk around later.

My magnesium was low today so they gave me an iv of that. There was no place to put it in my arm so they put it into my neck and moved all the other iv stuff to my neck so we can keep them all together.

I'm thinking tomorrow will be even better. I hope they pull this thing out of my face so I can eat some of those Snookies Cookies LADP sent me ... Before everyone else eats them up.

I also want to say thank you to everyone who has been sending me messages through the blog and email. It really picks up my spirits when I see a new one. One more thing, sorry about all the bad writing. I am posting via cellphone which is very hard. Till later.

Today Jan 30th

Hi there... Today was less painful...physically and emotionally. Mark's pain level was at 10 yesterday he said and today an 8. Which I was happy to hear. The surgeon came in this afternoon to check on Mark. We really like him. My brain is sorta shot so I can't think of what to write. But Mark is healing and so far no complications...and he sat up twice in a chair. Small steps... And tomorrow they may have him walk a bit.
Thanks for thinking of Mark and keep him in your prayers.

Pic

Realized it didn't get posted.

Alive and well

I just wanted to send this out mydelf to lrt everyone know I a. Doing good. A cit of pain but otherwise ok. Thqnks again for all your prayers.

Mark

Us

Mark is in recovery still. Surgery went good. Tail of pancreas and tumor gone. Spleen out. We need him to recover and next surgeon told us we do the liver transplant. The first request of mark's was he wanted me to update the blog and take a picture of him he smiled in pic but don't be fooled he is so much pain I can't stand it.

Tick ... Tock ... Tick ... Tock

In just a few hours, Jenna and I will be getting up to go to the hospital. Yes we are a little nervous. I just feel bad for everyone that is going to be sitting around the hospital waiting for me. How boring is that!

Yesterday my parents came into town. On the way home from the airport we did a drive by of the hospital to make sure they knew where they were going. Today we went to the mall and I got a bunch of magazines for this next week. After that we took a little trip down to the San Fernando Mission. I've been frequenting the mission since I came out of the hospital this last time. It is a very nice place to go pray and get yourself centered.

Tomorrow, Jenna will be updating the blog as the day goes on. We found a cool way to do it through our cellphones! I will try to update it also as soon as I can.

I just want everyone to know how much I appreciate your positive thoughts and prayers. I really mean that! It is very nice to know there are so many people out there who care.

Its all fun and games until someone loses a spleen

…our friend Chris says that and now its quite appropriate!

Nervous? Yes Anxious? Yes I just want the surgery over. Its that feeling like you just want to fast forward and shelter your loved one from any impending pain, worry and stress. Mark is a trooper (better than I’d be) but at the end of the day we both just want the surgery over and to have him back home. Today was the type of family day I love. My wish--- that I could freeze time and savor today… Baby is sleeping, Mark did some work around the house, I cleaned up things... and now the house feels super cozy, clean, and safe. Safe being my key word. I want us all safe. Mark safe. Baby safe. Family and friends safe. That is what I miss most since this all of this started --- that safe feeling. See this is why I have avoided writing in this blog. I don't want to be all weepy. I knew I couldn't come up with anything clever or fun. Mark and his amazing attitude and ability to keep things normal is what is getting us thru this. He is just concerned most right now about cleaning his car out for his parents to use when they are in town. I use to wonder--- how I have I been functioning for the past 57 days? ... and now I know its because of Mark's indescribable spirit. Its contagious.

A Change In The Plans

My surgery has moved from Monday to Tuesday of next week. It turns out the surgeon is going to be in Dallas on the 28th. Oh well. At least it was only moved one day. We met with the anesthesiologist yesterday and that went good. They are going to give me the "Juice" before my surgery to make me feel all warm and fuzzy inside. I'm real happy about this. So far we are scheduled to be first in but we may get bumped if an emergency comes up. We also spoke with a nurse at UCLA about what we can expect. Here is the rundown ...

1. Surgery should be around 5 hours.
2. I will either be moved into ICU or a Recovery Room after Surgery.
3. After about 3 hours or so I will be moved to my room.
4. All rooms are shared (this sucks). Private rooms are an additional $200/night!
   
5. The incision will look like a Mercedes symbol.
6. They will use staples instead of stitches.
7. There will be two drains attached to me and they are very uncomfortable to remove.
8. I get to go home once I can walk and go to the bathroom.

It really is too bad the day was moved. I was very happy with all the things that happened on January 28th. Especially the King Henry stuff. That was my good luck! Now that we are on January 29th I have had to do a little more digging. I have been able to find another lucky charm though! It turns out the greatest football team ever won the Super Bowl on January 28th and the 29th. Of course I am talking about the San Francisco 49ers!! Now that is good luck!



Events From January 29:

• 2004 - Cannabis and cannabis resin downgraded from Class B in United Kingdom
• 1995 - Super Bowl XXIX: The San Francisco 49ers defeat the San Diego Chargers 49-26 and become the first NFL team to win five Super Bowl titles.
  
• 1963 - First inductees into the Pro Football Hall of Fame are announced.
• 1959 - Sleeping Beauty, an animated feature produced by Walt Disney based upon a fairy tale, is released.
• 1936 - The first inductees into the Baseball Hall of Fame are announced.
• 1916 - World War I: Paris is first bombed by German zeppelins.
• 1891 - Liliuokalani is proclaimed Queen of Hawaii, its last monarch.
• 1886 - Karl Benz patents the first successful gasoline-driven automobile.
• 1856 - Queen Victoria institutes the Victoria Cross.
• 1845 - "The Raven" by Edgar Allan Poe is published in the New York Evening Mirror.
• 1676 - Feodor III becomes Tsar of Russia.
• 1595 - William Shakespeare's play Romeo and Juliet is probably first performed.
• 904 - Sergius III comes out of retirement to take over the papacy from the deposed antipope Christopher.

Birthdays:

• 1970 - Heather Graham, American actress
• 1954 - Oprah Winfrey, American producer, actress, talk show host, car giver and publisher
• 1952 - Tommy Ramone, Hungarian-born musician and record producer (The Ramones)
• 1945 - Tom Selleck, American actor
• 1880 - W.C. Fields, American actor (d. 1946)
• 1874 - John D. Rockefeller Jr., American entrepreneur (d. 1960)
• 1843 - William McKinley, 25th President of the United States (d. 1901)

Deaths:

• 1963 - Robert Frost, American poet (b. 1874)
• 1964 - Alan Ladd, American actor (b. 1913)
• 1980 - Jimmy Durante, American actor and comedian (b. 1893)

Keep The Faith Fundraiser

My sister Heather has spent some serious hours putting together a fundraiser for me where my family lives in Sierra Vista, Arizona. She has worked so hard for what looks like quite an event. It seems like almost every day I hear about someone new who has gone out of their way to help us. Of course my sister is such a go getter. Even The Mayor of Sierra Vista knows who we are! I just would like all of you in Sierra Vista to know how much we appreciate your support. It really means a lot to us. I have asked Heather to write a little about the fund raiser. I am sure everyone reading this will be as amazed as I am at all the things she has going on here. Thank you so much Heather!

Ok, The name of this fundraiser is Keep the Faith Fundraiser. It is going to be held at the Pueblo Del Sol Country Club on Feb. 2,2008. It starts at 4pm and goes till 9pm. We have DJs coming in at 6pm and before they get there SFC (Sargent First Class) Amy Morgan will be performing on the piano. We have lots of items to be raffled off as well as a 50/50 raffle and door prizes. We will be having a BBQ for the guests. Some of the items for raffle include Movie passes, dinner passes, golf passes, gift baskets from varies businesses in the area. We also have paintings and other pricey items for a silent auction. Its going to be a great night. We also got a Lutheran Organization called Thivent to match funds from the fundraiser. There have been numerous donations given from people who are unable to attend. The Mayor of Sierra Vista gave a substantial donation as well as many others in the community.


This is Lucky who is holding
a couple of tickets to the fundraiser.
Heather said they have already
sold around 80 or so tickets!

Making All The Arrangements

I got my vaccination shots Monday evening. They gave me two shots in my right arm and one in the left. I was a little worried I would start to feel a little 'flu like', a symptom of all three shots, but so far nothing. That is good.

My surgeons office was closed for Martin Luther King Day. I heard from them Tuesday morning though. We have scheduled the surgery for Monday January 28. I do not have to do a cardiogram because of my age. Today I will be going over to Facey Medical Clinic to have some blood drawn for a CBC and Chem Panel. On Thursday I will be taking a little trip down to UCLA to meet with the anesthesiologist and then meet with my Case Manager. We will be going over all the fine details of getting ready for the surgery.

Sunday my parents are flying into town. They will be at our house Sunday and Monday, move to a hotel across the street from the Hospital for 3 nights and then come back to our house with me on Friday.

It seems like things are definitely moving in the right direction. Its nice having it move in any direction really. This is our first step and we all feel good about it.

I was looking at events that happened in history on January 28. While looking at births and deaths, I found one of each that together struck me as odd.

• January 28, 1457 - BORN: King Henry VII of England
• January 28, 1547 - DIED: King Henry VIII of England
  

Father and Son, birth and death on the same day. Also, the two center numbers in the date are transposed. That has to be pretty rare. I have always thought rare occurrences mean you have good luck. Jenna's license plate has 666 in it. That is good luck. Last weekend at Starbucks I got craped on by a bird. What are the chances? That's good luck! So I guess I'm feeling pretty lucky about January 28.

Some other events that happened on January 28:

• 1990 - Superbowl XXIV: San Francisco 49ers beat Denver Broncos, 55-10 in New Orleans Superbowl MVP: Joe Montana, San Francisco, QB
• 1986 - Space Shuttle program: STS-51-L mission (Space Shuttle Challenger disaster) - Space Shuttle Challenger breaks apart 73 seconds after liftoff killing all seven astronautsChrista McAuliffe, who was supposed to be the first teacher in space.
• 1967 - My parents were married!
  
• 1938 - The World Land Speed Record on a public road is broken by driver Rudolf Caracciola in the Mercedes-Benz W195.
• 1934 - The first ski tow in America begins operation in Vermont.
• 1921 - A symbolic Tomb of the Unknown Soldier is installed beneath the Arc de Triomphe in Paris to honor the unknown dead of World War I.
• 1887 - In a snowstorm at Fort Keogh, Montana, the world's largest snowflakes are reported, being 15 inches (38 cm) wide and 8 inches (20 cm) thick.
• 1855 - The first locomotive runs from the Atlantic to the Pacific on the Panama Railway.
• 1521 - Diet of Worms begins, lasting until May 25

Pictures Of Us

Here are some pictures of Jenna, Jonathan and myself. We took most of them at a little park right around the corner from our house. Click on them to make them bigger.

Meeting With The Surgeon

After I had my injection on Jan 16, Jenna and I took a trip down to UCLA to meet with my surgeon, Dr. Busuttil. This was our first meeting with him so we weren't sure what to expect. Thankfully they seemed all over the situation and had a good plan.

The first thing they want to do is get me into surgery right away to remove the tail of my pancreas and my spleen. This was the first time anyone had talked about removing my spleen so we were a little surprised. I have drawn a picture to show you what the plan is.

The top picture shows where my

primary tumor is located. The
bottom picture shows what they
will be removing in this first operation.
Click on a picture to enlarge it.

They have found a tumor in the tail of my pancreas. It is sitting next to a vain coming from my spleen and I believe that is causing what is called Varices to grow in my esophagus and stomach. Four positive things:

• They have found what looks like the primary source and it will be removed.
• This operation will take care of the varices.
  
• People live without their spleen and pancreas tail without much problems.
• The Cowboys lost to the Giants.
  

I have to get a couple of vaccinations before I can have the surgery. We are trying to get those scheduled right away. I am getting:

• Pneumococcal
• Haemophilus Influenza
• Meningococcal Conjugate

I also have several tests I will be taking early this week. They will be doing a cardiogram and some other stuff to be sure I am well enough for surgery. I'm pretty sure I'll pass these. We are looking at surgery happening by the end of the week (Jan 20-25) or the next week. I've been doing a little research and it looks as though this is a 9-10 hour surgery. I will be in the hospital for 5 days and the recovery time is 8 weeks. I expect I will be feeling much better long before 8 weeks is up.

After I have healed from this surgery, we have 4 options for treatment, and I will probably be a combination of some of them. My options are:

• Debulking - Remove half the liver
  
• Chemoembolization - I'm not looking forward to this!
  
• Hepatic Artery Block - Much the same as Chemoembolization.
  
• Liver Transplant

At this point the goal is to prolong my life and shrink/kill tumors. My guess is we would do a debulking and then treat the rest of the tumors with either the Chemoembolization or the Hepatic Artery Block to shrink and kill them. Chemoembolization is usually used as a bridging therapy while we wait for the liver transplant. It is also used as a way to downstage the tumors in order to be eligible for a transplant. I would think we would move into these next steps fairly soon after I recover from the first operation.

So that's what I have to look forward to. On one hand, its real nice to have a more solid plan. On the other hand I'm pretty scared about going under the knife. I would say on a scale of 1 to shitless, I'm sitting in at about a 6.2. I guess thats not too bad. I can handle that.

My parents will be traveling out here for the operation. I will be nice to have them around. Unfortunately the hospital is about 1 1/2 hours from my house in some of LA's worst traffic. Thankfully, UCLA has a deal with some of the hotels next to the hospital. We are going to try and get some rooms there. It will be nice to have them so close by. Maybe they can bring me Starbucks every morning since they are so close! Of course we will also have to get them up to the house so they can see the baby.

I will try to be more timely with my posts this week. We should have quite a few tests to tell about and hopefully we will be nailing down a date for the surgery. Till then ...

My First Treatment

Finally, one month since we first met with Dr. Hecht at UCLA, I have received my first treatment. I was injected on January 16 with a drug called Sandostatin LAR. It is a long acting drug that I will be getting once a month. There is a list of side effects but so far it hasn't been bad at all. Here are a couple of pictures from the injection room.






The room was very nice. This is actually the room where they do all the chemotherapy injections. Each seat reclines and everyone has their own LCD TV and Direct TV box. This is a new medical facility so everything is still very nice and clean. You can click on the pictures to get a better look.

Although I was very nervous to get the shot, it wasn't nearly as bad as I had thought. The worst part was when the nurse was explaining to me why the needle was so big. I don't usually look at the needles (I'm a little scared of them). I've been reading about the drug and I have heard from several sources that the actual injection can be rather painful due to the thick nature of the drug they have to push into the muscle. Luckily, I didn't find the injection to be that painful. They gave it to me in my ass and it was over very quickly. Thank God baby got back because that needle was BIG and they went DEEP!

The rest of the day, and even now, my ass has been rather soar at the point of injection. They say the side effects will last as long as the drug is in my system. I'm not sure how long that is. The only other side effect so far came yesterday when I got a little nauseated. I had to lay down for bit but it soon passed. If that is all the side effects I get I will be a very happy boy!

My Kidneys Are Killing Me!

The Islet Cell Test

So everything went just fine yesterday. CT scans are not that bad. They slide you through one of those donut shaped things a couple of times and thats about it. They never take very long. The worst thing about them is the IV which injects an iodine contrast into your bloodstream. Crazy thing about that stuff is the metal taste you get in your mouth. Pretty nasty. It also makes you feel like you wet your pants. Fun fun fun.

They burned me a disk of the images but we will have to wait for the Radiologist to read them and make his report. They should be done by the time I go for my appointment with the surgon tomorrow. I will post a few images from some of the scans so you all can take a look. They are pretty cool.

Freedom Of Speech

Writing in a blog is a lot like talking to yourself. I find myself sitting here typing away, watching Robocop 2, and wondering if anyone is out there reading any of this. On that note, please feel free to write me back, ask questions or tell me something you think is interesting. To do this, just click on the 'comments' link at the bottom of any post.

And to those new to blogging. This blog is organized to post the latest entry at the top of the main page. I believe there is a way of changing that if you would prefer to have the oldest entries at the beginning but I am not sure how. If anyone does know how, feel free to write a comment letting everyone else know.

And Another Test

Today I am going down to UCLA for a Islet Cell Test. It is supposed to be a special kind of CT test which is good because they are not supposed to take very long. The only thing that sucks is they are using contrast which means I will be getting another IV in the arm. I'm not a big fan of needles if you didn't know that.

I am a little nervous about the outcome. They believe all this started in the pancreas but they haven't been able to see anything there yet. This test is supposed to better show us if there is anything in the pancreas that needs to be removed. Just before Christmas Dr. Hecht (UCLA Oncologist) told me we may do surgery on the pancreas and then put me on the list for a liver. What I am a little confused about is if they don't find anything on the pancreas will they still put me on the list for a liver? If they can't find anything there, it is what is called an Unknown Primary. If they don't see anything they may not want to do the liver transplant because the new liver is then susceptible to getting cancer again from the primary source. Who knows. We will see.

I was supposed to get the sandostatin injection today also but I moved it to Wednesday. I don't want to have both the sandostatin and the contrast injections on the same day. This sandostatin is going to be a pain in the ass. Literally if they decide to give it to me in the ass! The drug is rather thick and so is painful when they shoot it into the muscle. Not cool but hey, it's just once a month. All-in-all I am happy to finally be on some sort of treatment. They are still trying to get approval for another of the drugs Sutent. I don't know when that will happen.

In the next couple of days I hope to have a History 101. I haven't yet posted what went on in the hospital during that week. Until then ...

FAQ

So what do you have?

I have a rather rare type of cancer. It's official name is Pacreatic Neuroendocrine Carcinoma which is metastasized to the liver. Basically, they believe it started in the Pancreas and then moved to my liver. The fact that it moved to another organ makes it a Stage IV cancer. My life expectancy is from 1 to 4 years. I'm thinking I will make it quite a bit longer then that.


Where are you being treated?

I am a part of the Facey Medical system here in California. I am being treated by an oncologist who's office is here in Valencia and Mission Hills. We got a second opinion at UCLA which has turned out to be great. Because this type of cancer is a rarity, the oncologist at Facey hadn't had much experience with it. The UCLA doctor, on the other hand, had experience with this and was able to start piecing together a treatment plan. We are also working with a Pancreas/Liver surgeon named Dr. Ronald Busuttil. From what I have read on his bio at the UCLA website, he seems like he will be good to work with.


Have you ever heard of Lance Armstrong?

Yes.


How are you and Jenna doing?

We are doing good. It can be tough keeping on top of all this at times. Many people have told us of the importance in keeping the ball rolling. We have found that to be true. There are times when its tough to keep everything straight between Facey and UCLA. We do however have a lot of help with all this. We have a case manager at Blue Shield (insurance) who has been a great help. We also have a case manager at Facey that has been indispensable. We are keeping a positive attitude and keep trucking along. Jonathan has also been a great distraction. He is just our favorite thing in the world.


What is the treatment plan?

So far we have been doing a lot of tests and not much in the area of treatment. The "plan" is this though. Because this is a slow growing tumor, chemotherapy will likely not work. Chemotherapy only attacks fast growing cells. Instead they will use targeted drugs. One drug I will be using soon is called Sandostatin. Another drug we are going to be using is called Sutent. It is a drug that is normally used for Kidney cancer but they believe it will work for mine also. The goal of these drugs is not to cure me of cancer but to shrink the tumors to give me more time. The other part of the "plan" involves surgery. I am actually looking at the possibility of having two surgeries. If they can find some cancer in my pancreas then they will do surgery to remove that. There is some discussion of using a surgery called a Whipple Procedure. The bigger of the two surgeries is the Liver Transplant. A Liver Transplant is what the doctors consider my only chance at a cure.


Are you in pain?

No. I'm up and about and feeling good. I am currently taking a drug called MS Contin which is morphine. I have 45mg in the morning and another 45mg at night. When the tumors shrink, I will probably be able to stop taking the pain meds.

It All Started Here

On November 22, 2007 I started to feel ill. It happened right after we finished eating our Thanksgiving meal. By the time we got home I was feeling really bad. My wife, Jenna, ran out to get me some Malox, gasX and other medicines we thought might help. Nothing did. I was very uncomfortable that night.

The next day I went to urgent care to be checked out. They thought there was a possibility I had an ulcer. They took some blood and prescribed some medications for me. After a couple of days I started to feel a little better. Then one night I woke up with some very extreme abdominal pain. After a few minutes it started to subside and I was able to get back to sleep. Within about 10 min after falling asleep I woke back up again and the pain was back. I spent the rest of the night on the couch. It felt a little better to sit up a little.

That morning I went back to urgent care so they could take a look again. I had a fever, it's highest reaching over 102. They took some more blood and found my Kidneys were off the charts. The doctor thought it was possible I had a gallstone and sent me to get an ultrasound.

What they found on the ultrasound was numerous tumors on my liver. I couldn't believe it when he told me. I still didn't know if it was really cancer or not. They said it could be lesions, tumors or cyst and I didn't really know what all that meant. I did know it wasn't good and it scared the crap out of me.

The doctors from urgent care called my primary physician and told him what was going on. He scheduled a CT Scan for the next morning. It sucked. The following morning I had my CT scan done and then we met with my primary doc later in the day. Just as the ultrasound had seen, the CT showed multiple (10+) tumors on my liver. I was sent to the hospital later that evening. I had to wait in a bed in the ER before I got a room but that didn't take too long. My temp was way up at this point and I still had quite a bit of pain in the abdomen. I still didn't know what I had but I know it wasn't good.